Today, I wont hide behind a computer screen with a mascara filled face and type how awesome everything is, how honky dory it is. I wont type that despite our journey with Waylons heart that all is well.
Today I take off my mask and show the raw emotion involved. Today I am honest and REAL.
Honestly, I am struggling today. My heart hurts, my eyes hurt from the multiple spurts of crying for unknown durations.
After yesterdays appointment I am broken down. I dont usually allow myself to get this low, actually there are very few times that I can remember ever being this low. The biggest recollection is when we were first diagnosed with Waylons heart defect. I stepped away from the outside world for a bit and shut off my notifications from facebook. I couldnt bare dealing with everyones "im sorry for your situations" or the "I will be praying for your family" statements. I just wanted to be alone. Alone to deal with what was really going on, that my child would be born with half of a heart. With a messed up heart, missing parts, holes, parts to small to function correctly.
I through myself into research about this thing called Hypoplastic left heart syndrome. I reached out to support groups of parents for emotional well being and for more research since they would know first hand what I would be facing within the upcoming months.
So much came with this defect, it wasnt just a bum heart, but feeding issues due to being intubated and never learning to suck, vocal chord paralysis from being intubated, developmental delays, infection, compromised immune system, eye problems from low oxygenation, heart failure, organ damage from medications or the hearts low oxygenation. Then add in muscle problems and risk of brain damage from low oxygenation and being on heart-lung bypass machine. If it was a possibility, I read about it.
Almost everything I researched became a reality for my boy. But there were things we weren't told about that occurred at our local hospital that I later found out about, through reading his records.
Hypoxic-Ischemic Brain injury popped out at me from the middle of the page. I wrote it down to remember to research it after reading #3 of 6 packets. My heart sank when I typed it in and seen all of the things he will be at risk for in the future and what caused it.
I knew of this injury now, but was never able to sit down with a professional and discuss just what it meant. Until yesterday.
After two long years I was finally able to see the results from the MRI done one Waylon after he became very sick at our local hospital. He was lethargic, his liver was swelling and I didnt know if he would make it. She read off the findings and highlighted the brain injury, then went over the images. Each one showed something new, something worrisome. Empty parts of his brain that are dead, filled with spinal fluid and will never be re-gained. Parts of his brain that were enlarged and the brain bleed. My eyes filled with tears as she went over them, but it killed me just a little when she described the dead part of his brain. Who wants to hear that part of their childs brain, no matter how small, is DEAD?
Even more upsetting is not knowing! Not knowing what this will mean for him in the future. He will certainly have delays (as he does right now) but we will not know how severe they are until we get there, and we don't know if it will make him "handicapped" in those areas that he doesn't progress in.
It wasn't until yesterday that I was finally able to understand how severe this was, I knew from reading about it that it wasn't good but had not seen the images or been explained to how bad his was. I didn't know what it meant for him at the time.
I feel like we were diagnosed all over again. Alone, and that no one else had experienced this.
I feel guilt for not getting him to another hospital, even though we didn't have a choice at the time (or rather was told we didn't). I wonder how a hospital can withhold such information, information that can be critical for his progression in the future and in the technique used by therapists, myself and doctors. How can that not be seen as pertinent information?!? And why in the HELL did I have to argue with a nurse that he was having seizures when he was already diagnosed with this injury (which intensifies risk of seizures)? How can it be okay to leave a family in the dark over this situation and expect them to find their own way?
Its not! Withholding this information did not save me from stress, and it wouldn't have saved me during the times that he was so unstable. Rather, it has created more stress because we are just truly learning about it, and because we could have went about his therapies in a different manner that would have worked better for him at the time. There is no excuse for it.
So today, I am truthful. I am putting my anger, frustration, fear and sadness out there. I am taking off my mask of "Im okay". I wont stay here forever, just as I didn't when we found out about his heart. We will pick up the pieces yet again and push forward as ALWAYS to ensure that he gets the best care that he can get. Ensure that we aren't missing making memories that we could never get back because we are sulking in the anger, frustration, fear and sadness.
Wednesday, November 12, 2014
Monday, November 3, 2014
That scary F word!
That scary F word, for some its a dirty word with a different meaning, but for heart families its that scary word. Its the one we have been gearing up for since we found out about our childs diagnosis (mainly HLHS and HRHS families). The one we have hoped our children made it to, but hated that they had to endure it. It makes us want to say that other F word, the vulgar, no-no word.
Its taken me a bit to be able to really sit down and put everything down on paper (so to speak). Partly because I just didnt want to relive it I guess, wanted it to be in the past (though it never really will, its apart of us) and partly because we have just been living LIFE to its fullest since it happened.
The Fontan is the third palliative (hate that word, but its true) open heart surgery in the three surgery series for HLHS and HRHS children. It doesn't give them a full heart, though some have that misconception. Its the one that rocked me to my core a few months back when I received the call for scheduling. We have prepared for this surgery for quite some time, emotionally, financially, physically.
I was so scared of the outcome. Would he struggle, would we lose him through the surgery, would it be another LONG stay? I cried for days, then cried some more. I felt my body being drained by the thought of handing my baby boy over again. After all he had been through, all of the complications, I was going to have to watch him be wheeled down a corridor again and know what was going to happen in the operating room.
Everything had to be done strategically to prepare. Contact anyone who is in contact with Waylon (therapists, nurses etc) and tell them that we would stop all visits 2 weeks before we left for surgery. Make sure a rental car was held, a hotel room was booked and money for gas, food and necessaties were on hand. Then pack, and I mean PACK EVERYTHING!
While packing half of my house I would stop and cry some more, always back to that same thought, "what if this is the last time he wears this, or the last time he plays with this".
The night before we left for Michigan we took the kids to their grandparents, spending some much needed time together and taking tons of pictures. Before leaving for the evening I gave huge hugs to our older children, holding back tears because the last time I left them with their grandparents I didnt see them for 4 months. Our oldest knew the circumstances, and he understood all to well what could happen. He cried on my shoulder as I told him good night and see you soon buddy. My heart broke even more! I felt like a terrible mom, leaving them when they were needing me too. I knew it had to be done, and that they were safe, that all of it was for their baby brothers sake, to keep him ALIVE.
The morning of departure was filled with me running around like a chicken with her head cut off trying to make sure NOTHING was forgotten. As we loaded into the rental car I snapped a quick picture of my little man smiling in the back seat, surrounded by all of his things. We headed out for our 6 hour drive.
I cant lie and say that I wasnt just a little excited. I know that sounds terrible (when you live this life you have to find possitives in everything, otherwise you WILL be taken to a very dark place that you dont want to be!), the last time Waylon was stuck in the hospital. He didnt get to witness Michigan at its finest, and how beautiful it was. I was excited that his daddy and I would have some time to show him some of the things we loved while there the last time, what brought us comfort, and to say "we made it back!!".
Days before surgery were filled with tests, tests, and more tests! He had his first sedated echo, in which they gave me the job to administer his "sleepy" medicine because of his oral aversions. I then rocked him for 5 minutes and his body across my lap, then went heavy and limp. He woke a few hours later, we redressed him and headed out for a day on the town!
We walked around the wonderful Ann Arbors down town, hitting some of the shops that we enjoyed the last time. Our favorite was the homemade cupcake shop!
One of the best visits we did while there was to meet Waylons runner, Devon. She came to us from a group I signed him up in. Runners are paired with buddies who have special needs, and they dedicate their motivation, love, workouts and miles to their buddies. We were so excited to meet this wonderful woman who had loved on our Waylon as if he were family, she had logged over 200 miles for him and sent him tons of special goodies (including buying him a star for christmas!)
The next morning was his heart cathetorization. Again I helped to give his "sleepy" meds. He started to giggle and look a bit dazed. They wheeled him away as he waved bye and laughed at any and everything.
He slept for quite a while after the heart cath, which was good because he had to lay flat for 6 HOURS. But when he woke he was MAD, he wanted me and no compression bandage, nurse or doctor telling him NO was going to stop him from sitting with his mommy. Sit with me he did, for a good few hours. My butt was numb, my back hurt, I needed to pee, but anything to keep him calm!
He was admitted after the cath as protocol and I spent the night by his bed, where I didnt sleep because I was too nervous. I just kept looking at him, in case it was the last time I seen him like that.
Morning came and we passed him around for snuggles between his dad and I, taking as many pictures as we could. They came in to tell us it was time, then proceeded to walk us down the hall to elevators to pre-op. Techs, nurses, doctors and anesthesiologist all came in one by one asking questions about his history, his delays etc. Then as I held him they pushed his first round of sedation through his IV (which luckily worked!). Again we snuggled a giggly boy and handed him off to the team as we met with his wonderful surgeon Dr.Ohye (no words can explain the admiration we have for that man!). I wanted to burst into tears as we left the pre-op area but I held it together.
Hours passed, we did the same old thing, get coffee, something to eat and post seat in the waiting room for updates! We watched people come and go, met another family who had transferred from another hospital and helped them to feel at ease.
Updates were going well, we updated our family and friends and kept up with updates from our good friends who were there again and had just had surgery the day before. All seemed well with our friend until we got the news that he had to be put on life support (ECMO). My heart sank! I wanted to scream, I had been given those words from a team of doctors before about my own son. They were my friends, we had spent time in the same hospital many times before, and were friends from home. I knew how much they loved that boy, he was their life, and they his. And the thought quickly rushed over me that we could be in that boat again, we could get those same words told to us again.
Our updates slowed and the final one came through " he is DONE, he did beautifully. He is in recovery and you can go back and see him when he is settled in an hour or so." My heart still in my gut rose back into my ribcage for the moment.
Walking in to see him was a flood of emotions. There is was, alive, heart rate well, oxygen saturation was good and he was starting to wake. We tried to give a bottle of water and he just threw it up, his belly wasnt ready for it yet. I just wanted to hold him, kiss him, but I just held his hand and told him how proud I was of him.
After visiting with him and asking for him to be placed in an actual room because the noise was to much for him, I went out for some food. I passed my good friend on the way out and the sick feeling overwhelmed me again. I hated what they were going through at that moment.
I found out the next morning that our good buddy wasnt doing well, that after many tests his parents had to make the heart breaking decision to take him off life support and let him be free. I wanted to run to her, squeeze her. She was the second GOOD friend I had made on this journey that I had ACTUALLY met and made a huge connection with that lost their child, while my child was in the hospital too. I felt survival guilt. While so happy about my own child I felt terrible that another family had lost theirs. To personally know the family made it even worst.
The next few days were the basic, pain management, administering medication, blood draws and hoping for POOP. Seems basic, but it can become dangerous. Waylon hadnt had a bowel movement for DAYS! He was bound up, his stomach was very bloated, he was in a lot of pain. We tried medication after medication, until he finally went! We were lucky that he didnt have a lot of fluid build up, which we were afraid would happen due to his past complications with it. He didnt want to drink, didnt want to take his meds. His stomach was very unsettled and anytime anything went in, it came right back out.
My husband couldnt stay long, but when he was there he was present and trying to help comfort him in any way he could. This even meant standing for an hour beside his bed rubbing his head and holding his hand so he would fall asleep.
He left and Waylon and I were there to get through it together, again. it really, quite frankly, SUCKED. I hated not having my husband there again, being seperated. But bills needed paid, we needed a home to come back to, and two children back home that needed their parents. I always say that just because you have a critically ill child doesnt mean your bills stop, trust me it is so true. You do what you have to, and we did it again.
I eventually got Waylon to drink more and take his medicine, though it was still hell sometimes because he was scared he would throw up the medicine (and sometimes he did, along with all of the milk or food I helped him to eat). I started to work with him more, having him to reach for toys, helping him to sit up for small amounts of time to help with his chest tube drainage. Once those tubes were out he felt so much better!! I was able to get him to sit up for longer periods, and it was so much easier to transfer him into the chair with me from the bed (YES I am one of those moms who handle it myself, never knew it WASNT the norm until the nurses told me).
The team was so happy with his progress, and how his heart looked that we were discharged 9 DAYS post op! A record time for not only Waylon, but the hospital! We were ALL amazed!
We made the travel back home the same day, it did not go without incident, trust me. Waylon cried so many times and was so uncomfortable (who wouldnt be 9 days post open heart surgery, and sternum shaving). We had to stop several times to get him out and help him.
Being home at first was hard! I hadnt had to care for a fresh chest wound like his the last time and I was so afraid he was going to get an infection. Almost EVERYTHING set him over the edge! My phone would ring and he would start this blood curdling scream! I would change his clothes or diaper, same thing. Giving him his medication was a NIGHTMARE! He screamed the whole time and would throw everything back up, which meant re-drawling all of the meds again and cleaning up puke.
Eventually he got the hang of things again and became more settled. Which meant him being his silly self again, and showing us just how awesome he is! At just a few days after being home he was rolling back over onto his stomach again and trying to army crawl.
Things have been quite steady at home so far. We have had some scary times with new heart meds because his heart had weakened, and him getting very dehydrated at one point (months later) and becoming lethargic. We found out he had a common cold and enterovirus. He handled them decently (though we believe he had them for at least 2 weeks, it takes him longer to over come sickness). We have traveled out of state since being home for a day long family vacation. We have went on our 3+ mile hikes again, numerous times.
Update on our buddies family: After the smoke somewhat cleared in their situation, they started a foundation in Liams name. The funding goes to the childrens heart foundation which contributes to funding for research for our kids! They are amazing people, and through their heartache they are doing great things in his memory, for ALL of our kids. They held their first annual walk and we attended. We are so grateful to know them, and to have known Liam.
Any photos taken from our site without our permission WILL be found, and the person WILL be prosecuted to the fullest extent of the law. All photos are owned by the Rainey family and are NOT to be used for personal use.
Its taken me a bit to be able to really sit down and put everything down on paper (so to speak). Partly because I just didnt want to relive it I guess, wanted it to be in the past (though it never really will, its apart of us) and partly because we have just been living LIFE to its fullest since it happened.
The Fontan is the third palliative (hate that word, but its true) open heart surgery in the three surgery series for HLHS and HRHS children. It doesn't give them a full heart, though some have that misconception. Its the one that rocked me to my core a few months back when I received the call for scheduling. We have prepared for this surgery for quite some time, emotionally, financially, physically.
I was so scared of the outcome. Would he struggle, would we lose him through the surgery, would it be another LONG stay? I cried for days, then cried some more. I felt my body being drained by the thought of handing my baby boy over again. After all he had been through, all of the complications, I was going to have to watch him be wheeled down a corridor again and know what was going to happen in the operating room.
Everything had to be done strategically to prepare. Contact anyone who is in contact with Waylon (therapists, nurses etc) and tell them that we would stop all visits 2 weeks before we left for surgery. Make sure a rental car was held, a hotel room was booked and money for gas, food and necessaties were on hand. Then pack, and I mean PACK EVERYTHING!
While packing half of my house I would stop and cry some more, always back to that same thought, "what if this is the last time he wears this, or the last time he plays with this".
The night before we left for Michigan we took the kids to their grandparents, spending some much needed time together and taking tons of pictures. Before leaving for the evening I gave huge hugs to our older children, holding back tears because the last time I left them with their grandparents I didnt see them for 4 months. Our oldest knew the circumstances, and he understood all to well what could happen. He cried on my shoulder as I told him good night and see you soon buddy. My heart broke even more! I felt like a terrible mom, leaving them when they were needing me too. I knew it had to be done, and that they were safe, that all of it was for their baby brothers sake, to keep him ALIVE.
The morning of departure was filled with me running around like a chicken with her head cut off trying to make sure NOTHING was forgotten. As we loaded into the rental car I snapped a quick picture of my little man smiling in the back seat, surrounded by all of his things. We headed out for our 6 hour drive.
I cant lie and say that I wasnt just a little excited. I know that sounds terrible (when you live this life you have to find possitives in everything, otherwise you WILL be taken to a very dark place that you dont want to be!), the last time Waylon was stuck in the hospital. He didnt get to witness Michigan at its finest, and how beautiful it was. I was excited that his daddy and I would have some time to show him some of the things we loved while there the last time, what brought us comfort, and to say "we made it back!!".
Days before surgery were filled with tests, tests, and more tests! He had his first sedated echo, in which they gave me the job to administer his "sleepy" medicine because of his oral aversions. I then rocked him for 5 minutes and his body across my lap, then went heavy and limp. He woke a few hours later, we redressed him and headed out for a day on the town!
We walked around the wonderful Ann Arbors down town, hitting some of the shops that we enjoyed the last time. Our favorite was the homemade cupcake shop!
One of the best visits we did while there was to meet Waylons runner, Devon. She came to us from a group I signed him up in. Runners are paired with buddies who have special needs, and they dedicate their motivation, love, workouts and miles to their buddies. We were so excited to meet this wonderful woman who had loved on our Waylon as if he were family, she had logged over 200 miles for him and sent him tons of special goodies (including buying him a star for christmas!)
The next morning was his heart cathetorization. Again I helped to give his "sleepy" meds. He started to giggle and look a bit dazed. They wheeled him away as he waved bye and laughed at any and everything.
He slept for quite a while after the heart cath, which was good because he had to lay flat for 6 HOURS. But when he woke he was MAD, he wanted me and no compression bandage, nurse or doctor telling him NO was going to stop him from sitting with his mommy. Sit with me he did, for a good few hours. My butt was numb, my back hurt, I needed to pee, but anything to keep him calm!
He was admitted after the cath as protocol and I spent the night by his bed, where I didnt sleep because I was too nervous. I just kept looking at him, in case it was the last time I seen him like that.
Morning came and we passed him around for snuggles between his dad and I, taking as many pictures as we could. They came in to tell us it was time, then proceeded to walk us down the hall to elevators to pre-op. Techs, nurses, doctors and anesthesiologist all came in one by one asking questions about his history, his delays etc. Then as I held him they pushed his first round of sedation through his IV (which luckily worked!). Again we snuggled a giggly boy and handed him off to the team as we met with his wonderful surgeon Dr.Ohye (no words can explain the admiration we have for that man!). I wanted to burst into tears as we left the pre-op area but I held it together.
Hours passed, we did the same old thing, get coffee, something to eat and post seat in the waiting room for updates! We watched people come and go, met another family who had transferred from another hospital and helped them to feel at ease.
Updates were going well, we updated our family and friends and kept up with updates from our good friends who were there again and had just had surgery the day before. All seemed well with our friend until we got the news that he had to be put on life support (ECMO). My heart sank! I wanted to scream, I had been given those words from a team of doctors before about my own son. They were my friends, we had spent time in the same hospital many times before, and were friends from home. I knew how much they loved that boy, he was their life, and they his. And the thought quickly rushed over me that we could be in that boat again, we could get those same words told to us again.
Our updates slowed and the final one came through " he is DONE, he did beautifully. He is in recovery and you can go back and see him when he is settled in an hour or so." My heart still in my gut rose back into my ribcage for the moment.
Walking in to see him was a flood of emotions. There is was, alive, heart rate well, oxygen saturation was good and he was starting to wake. We tried to give a bottle of water and he just threw it up, his belly wasnt ready for it yet. I just wanted to hold him, kiss him, but I just held his hand and told him how proud I was of him.
After visiting with him and asking for him to be placed in an actual room because the noise was to much for him, I went out for some food. I passed my good friend on the way out and the sick feeling overwhelmed me again. I hated what they were going through at that moment.
I found out the next morning that our good buddy wasnt doing well, that after many tests his parents had to make the heart breaking decision to take him off life support and let him be free. I wanted to run to her, squeeze her. She was the second GOOD friend I had made on this journey that I had ACTUALLY met and made a huge connection with that lost their child, while my child was in the hospital too. I felt survival guilt. While so happy about my own child I felt terrible that another family had lost theirs. To personally know the family made it even worst.
The next few days were the basic, pain management, administering medication, blood draws and hoping for POOP. Seems basic, but it can become dangerous. Waylon hadnt had a bowel movement for DAYS! He was bound up, his stomach was very bloated, he was in a lot of pain. We tried medication after medication, until he finally went! We were lucky that he didnt have a lot of fluid build up, which we were afraid would happen due to his past complications with it. He didnt want to drink, didnt want to take his meds. His stomach was very unsettled and anytime anything went in, it came right back out.
My husband couldnt stay long, but when he was there he was present and trying to help comfort him in any way he could. This even meant standing for an hour beside his bed rubbing his head and holding his hand so he would fall asleep.
He left and Waylon and I were there to get through it together, again. it really, quite frankly, SUCKED. I hated not having my husband there again, being seperated. But bills needed paid, we needed a home to come back to, and two children back home that needed their parents. I always say that just because you have a critically ill child doesnt mean your bills stop, trust me it is so true. You do what you have to, and we did it again.
I eventually got Waylon to drink more and take his medicine, though it was still hell sometimes because he was scared he would throw up the medicine (and sometimes he did, along with all of the milk or food I helped him to eat). I started to work with him more, having him to reach for toys, helping him to sit up for small amounts of time to help with his chest tube drainage. Once those tubes were out he felt so much better!! I was able to get him to sit up for longer periods, and it was so much easier to transfer him into the chair with me from the bed (YES I am one of those moms who handle it myself, never knew it WASNT the norm until the nurses told me).
The team was so happy with his progress, and how his heart looked that we were discharged 9 DAYS post op! A record time for not only Waylon, but the hospital! We were ALL amazed!
We made the travel back home the same day, it did not go without incident, trust me. Waylon cried so many times and was so uncomfortable (who wouldnt be 9 days post open heart surgery, and sternum shaving). We had to stop several times to get him out and help him.
Being home at first was hard! I hadnt had to care for a fresh chest wound like his the last time and I was so afraid he was going to get an infection. Almost EVERYTHING set him over the edge! My phone would ring and he would start this blood curdling scream! I would change his clothes or diaper, same thing. Giving him his medication was a NIGHTMARE! He screamed the whole time and would throw everything back up, which meant re-drawling all of the meds again and cleaning up puke.
Eventually he got the hang of things again and became more settled. Which meant him being his silly self again, and showing us just how awesome he is! At just a few days after being home he was rolling back over onto his stomach again and trying to army crawl.
Things have been quite steady at home so far. We have had some scary times with new heart meds because his heart had weakened, and him getting very dehydrated at one point (months later) and becoming lethargic. We found out he had a common cold and enterovirus. He handled them decently (though we believe he had them for at least 2 weeks, it takes him longer to over come sickness). We have traveled out of state since being home for a day long family vacation. We have went on our 3+ mile hikes again, numerous times.
Update on our buddies family: After the smoke somewhat cleared in their situation, they started a foundation in Liams name. The funding goes to the childrens heart foundation which contributes to funding for research for our kids! They are amazing people, and through their heartache they are doing great things in his memory, for ALL of our kids. They held their first annual walk and we attended. We are so grateful to know them, and to have known Liam.
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| Waylons 2nd birthday!!!!! |
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