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Friday, June 8, 2012

Light bulb!

This past week of being home after Jonah's heart cath were some confusing and stressful days. Jonah came home last Saturday and went easily down for bed at 6:45p...he slept for 12 hours-fantastic!
Some time around Sunday evening when Jonah was starting to run out of gas, his body and head felt warm to the touch. Of course we were thinking fever, even though his cath sites looked good and infection-free. When we took his temperature- no temperature. But he was also acting like he wasn't really feeling good, not just tired. That night we woke up to hear him moaning and groaning on the monitor. Nothing like we have heard him do when he's gone through a typical teething phase, which is about the only reason he would be waking up in the middle of the night over the recent months. I couldn't shake the feeling that I needed to get up and check his temp again. No fever, but clearly uncomfortable and distressed. O2 Sats, normal. We brought him in to bed with us and he fell asleep pretty quick after getting some Ibuprofen. Come Monday, Jonah woke up feeling so-so and nothing seemed all that out of the ordinary. By nap time he was a disaster. He absolutely would not go down- after falling to sleep in my arms, the second he hit the crib he was up like a bolt of lightning. After several attempts, he finally got 2 hours in. When he woke up I gave him some Tylenol because he just seemed uncomfortable again; he wouldn't play, had a hard time finding a content position on my lap, and was over the top sensitive. About 30 minutes after Tylenol, he was like a totally different kid!! Bouncing off the walls, acting goofy, playing hard. We felt like we could maybe rule out a brewing infection by this point and by the way he acted before and after a little pain reliever, it really seemed like something else was bugging him. All the while, Jonah was getting back to his normal eating and potty patterns, so nothing there. We were making ourselves crazy trying to think of the possibilities, questioning whether we should bring him back in to have him examined again=Torture!

I called our Cardiologist that night trying my best to explain how Jonah had been acting and having a really hard time putting my finger on something definitive. He asked questions about facial swelling, oxygen saturations, signs/symptoms of infection. All I had for that was No, Nope, Nada. We hung up with the agreement to have him looked at by the Pediatrician in that maybe we were dealing with bad timing on teeth, an ear infection, or something totally random.

A top contender in the realm of possibilities Rob and I were stressing over was the adjustment that Jonah's body was experiencing to the change of blood flow after having 7 coils placed. After the Glenn, we knew that headaches were expected. Big change to blood flow with the Glenn. So we thought since they definitely tweaked things again going to the upper half of the body, a headache was certainly possible.

Finally, I talked with some fellow heart mom's who helped me think of some more pointed and specific questions to ask our cardiologist. I called him Wednesday morning on our way to work...and this is when the light bulb went on...
He said that the collateral vessels that they coiled off in the cath fed areas in and around the chest wall and ribs. "This can cause some pain and discomfort". Hellloooo?!?!?! That had to have been it! It shed A LOT of light on our particular situation. We love, love, love our cardiologist and entire medical team and respect the fact that they can't go around scaring parents over every single potential side effect under the sun. Because these kids are so different, there is literally no "textbook" to follow. But this kind of seemed like a "nice to know" sort of thing:)

A huge "thank you" to our fellow heart families out there!! The network of sharing our most personal joys, triumphs, pains, griefs, and "has your child ever experienced x-y-z" is PRICELESS!!!

A few pictures of our brave boy...

Sunday, June 3, 2012

Cath update #2...and fast forward 48hours

Alrighty...a total of 7 coils placed in both arterial and venous collateral vessels. We just talked to Dr. Patel. Pressures in the heart and lungs look really good. There is no narrowing of either pulmonary arteries. Aorta is of good, normal size. No enlargement of the heart muscle. No arrhythmia's. All in all, not too bad. They said those collaterals were pretty typical of child at Jonah's stage pre-Fontan. 2 were really twisty though and 1 of those will need to get clamped during the Fontan.

Jonah came out of sedation like a bear. He was so out of sorts and irritable for a good long while. As soon as we saw him he took it up a notch. Thankfully we were able to pick him up right away as long as we kept his leg straight. We were in recovery for really only an hour and then headed up to the 2nd floor for our overnight stay. Jonah continued to allow staff to touch him without loosing his marbles but it is very likely that general anesthesia helped in that department. He stayed pretty content in our laps for a long time but he was not able to get up and walk until 4:30 in the evening. Problem was, the kid would.not.sleep. Took about a 20min snooze but that was it. He did perk up after a little Tylenol; sat up, played, ate, laughed. We tucked him his crib about 9:00 and by 9:30 he fell asleep comfortably. Unfortunately, I could not relax enough to drift off so I was kind of up & down for a while. At about 11:30 I saw a red light swirling around (oxygen monitor taped to Jonah's finger) and realized he was intent on pulling his IV out. He still needed it for antibiotics so I got him up to rock with me and he did sleep there for the most part from 1:45 until 4:45am. I, still did not sleep, at all. Rob was able to catch some z's on and off, I just couldn't wind down. The plan was to have his discharge tests start earlier with the hopes of leaving earlier so when the tech came in to do his EKG at 5:45am we woke him up to do the test. But...nothing else happened after that. Ugh. So, we decided we would just try to sleep again with very specific "do not disturb" instructions for the staff. At 8:30am we were up and at 'em again. Now it was a chest xray. We had to go to main radiology to get this done and since it was a Saturday we had to go to the adult side of the hospital. Yuck. They strapped him in to what looked like a mini electric chair to accomplish this. The very minute we walked upstairs the ECHO tech was there. By now, Jonah had completely come undone. He was so hysterical from the chest xray we needed to stop the ECHO halfway through to give him a break. He was out of control. His fear of all things medical had officially gone to another level. He absolutely lost it. This is when Rob and I basically did too. We were beyond exhausted and seeing him go through this was absolutely gut-wrenching. We tried not to, but it was hard not to think of what his 3rd surgery/recovery was going to be like when he was dealing with something minor in comparison and he was having SUCH a difficult time:( After all was said and done, Jonah passed out in Rob's arms for about 2 hours or so. And we had plenty of time for napping because cardiology didn't come by until about 1:30pm to discharge us.

All of these tests were done to make sure that Jonah's heart and body was adjusting to not functioning with those collateral vessels. Over time, the heart function adapts and changes with these vessels but it is not necessarily in an efficient way. So clotting them off could be enough of a change to tweak things a little. Thankfully, all of Jonah's results were good. No areas of concern. Nothing new. Soooooo, after Dr. Ilbawi and surgical team reviews Jonah's cath on Wednesday, we will get a call from Dr. Ilbawi's nurse to schedule the Fontan. To lock it in. To commit and never look back. I can't even begin to describe our mixed bag of emotions on that one...

We are home and Jonah is not feeling great but not feeling horrible either. He for sure needs some time to reset but he is clearly happy just to be here. He had a big smile on his face when we walked in the door, immediately wanted to look for Sasha, and had a good 12 hours of sleep last night. Home IS where the heart is.

Friday, June 1, 2012

Cath update #1

We made it! So...we got here this morning a little bit before 630am. I pretty much started sliding down the slippery slope of my emotions on the walk in from the parking lot. I am surprised the sweet lady that checked us in didn't call the psych ward to have me checked in:) After she told me a personal story about her own daughter, I was able to get a hold of myself and rest with the fact that, as always, God puts people in our path for a purpose.

Jonah's usual reaction to all things resembling the outside physical structure of a hospital or doctor's office began at pretty much the same time. He settled nicely with Rob of course. He continued to be upset pretty much through taking his weight and vital signs. He soaked his jammies (and Rob's shirt) pretty much right away so we quickly got him into his gown, got his "cool cars" and iPad out and he actually did really, really, REALLY well!!! Rob and I were prepared for a solid hour of uncontrollable crying but in true Jonah fashion he pulled up his bootstraps and handled the whole process like a champ!! His versed surprised me the most- I thought they would need to give him enough to take down a small elephant in order to pry him from our arms but he swallowed it easily and in what seemed like only a few minutes he was drunk as a skunk. We carried him to the cath room doors, he gave us both kisses with the silliest grin on his face and went in to the grips of the RN and MD to get this ball rolling. He cried out for "daddy" a couple of times but that was it. Barney, Blanket and his pacifier accompanied him to the table and the nurses assured us those buddies of his did not let him down:)

As I started this, I got a call from the nurse and Dr. Patel was able to get the appropriate access he needed on the first attempt"s"...plural-because they actually have to insert the catheter in two places in order to obtain all the data they need. In the groin and in the left arm. He goes in through the arm in order to get the most accurate info from above. Given the nature of Jonah's new anatomy, they are not able to fish all the way up from the bottom. We also were told they need to coil some collateral vessels around Jonah's super vena cava. These collateral vessels are completely expected and pretty much unavoidable. The body is always trying to compensate for the compromised blood flow to and from Jonah's heart. These collateral vessels are kind of like a little spider web or finger-like vessels that are very small but they can allow for increased blood flow/pressures to areas of the heart/lungs that the Dr's do not want. This intervention means we will need to spend the night here while Jonah is observed and gets some antibiotics. We knew this was a possibility but in our heart of hearts wanted nothing more than to leave this place in our dust tonight:( Good thing we brought reinforcements!!!

Stay tuned!