Wednesday, May 21, 2014

Forward Progress...

Maia's recovery from her second open heart surgery, the Glenn, has been faster than we all anticipated! We were prepared for complications and expected a much longer recovery but so far everything has been going smoothly. 

Maia in her pigtails

The day after surgery, although Maia was still on the ventilator, her trach tube was put back in, instead of waiting a week like the Drs had originally planned. She was only on 2 heart meds, 1 pain med, 1 sedative, and 3 diuretics. She was also on antibiotics, as a precaution, since her surgery incision was close to her trach site. A few days post op, Maia was already getting chest tubes taken out and her urine catheter removed. Then she was back on her trach collar and completely off the vent. Everything was moving at such a fast pace! Within the next few days after that, she was off the vent and only had a couple of IVs attached. Maia also didn't get as swollen and puffy as we expected her to. I think it's because we remember how big she got after her first surgery, and this was nothing compared to that. The Drs and nurses also commented on how good Maia looked. Just from her appearance, it was almost like she didn't have surgery. By the end of the week she looked like she was back to normal! 

A few hours after surgery

2 days post op

3 days post op

4 days post op

It was such a relief to see Maia doing so well! I constantly asked the Drs about how her kidneys were functioning, but they reassured me that so far, they were working just fine with no signs of any further damage or complications similar to last time. They increased her diuretics to ensure she was peeing out a good amount, but it caused her potassium to decrease since she was constantly peeing it all out. Other than that, she had no kidney concerns!!!

Monday, May 12, 2014

Monday was a big day for Maia! A week after the surgery, Maia had been completely weaned off of her heart and pain meds, and was only on diuretics and finishing the course of antibiotics. However, she had been extremely fussy, so she was getting some morphine and/or Tylenol, as needed.... Well, we found out why she had been so fussy.... her two bottom teeth finally broke through! It was very exciting, but at the same time, I felt so bad for her that she's recovering from major surgery and now she has the added pain of teething! So I told them to just give her Tylenol because giving her morphine for teething just didn't seem right! Right now she really isn't in the mood to show off her new little pearly whites, so you can only get a good glimpse of them when she's crying... she will only stick her tongue out when you ask her to show her teeth!

Trying to get Maia to show us her teeth!

That same morning we found out Maia had teeth, it was also the same morning she had a swallow study done. This would determine how well Maia's swallowing coordination is, and to give us an idea of how aggressive to be when it comes to feeding her orally. So she was brought down to the radiology dept. where her occupational therapist, Helen would force feed her different consistencies of barium. Using barium allows them to see the contrast better on the xray, to see where the liquid is going after she swallows it. We want to see that Maia is able to protect her airway while swallowing. So Maia was put in a little chair and tucked in between the x-ray machine and a small wall-like structure, and Helen fed her with a bottle. She had a barium-filled syringe on hand just in case Maia didn't like the bottle. Helen had been stressing about this swallow study because most kids that haven't had the chance to feed orally at this age develop an oral aversion and find it extremely difficult to learn how to eat by mouth. To Helen's surprise, Maia drank from the bottle like she had been doing so all her life! Maia had great coordination swallowing all the different consistencies and did better than anyone expected! So now, before each of her g-tube feedings, Maia is able to drink about 15mL of formula or breastmilk by bottle. A drop of green dye is added just to check and see if any of it gets into the trach, and to see how much of it she actually drinks or spits out. She's been able to take a bottle before most of her tube feedings, however sometimes she's too sleepy to finish all 15mL. The Drs currently have her on bolus feeds every 3 hours, with each feeding lasting 1 hour. The goal is to get her to feed under an hour every 3-4 hours. They have also weaned her off of the special cocktail of fortified breastmilk mixed with a high calorie formula. It was specifically formulated to be gentle on her kidneys, but since her kidneys have proven to be ok with no further complications, she can now have regular formula or breastmilk. She just started taking Enfamil 20 which is similar to breastmilk, mainly because my supply has slowly decreased the last few weeks, so she's mostly taking formula now. I expect to run dry sometime in the next couple of weeks! But I'm still trying to pump out every last drop that I can! Overall she seems to like drinking from a bottle, so we're hoping she continues to do well and eventually work towards eating solid foods just like a normal baby her age. 

Maia waiting to start the swallow study
So sweaty after it was all done

Friday, May 16, 2014

Friday was another big day for Maia... she was temporarily decannulated, for about 30 minutes!!! The Drs had her trach taken out just to see how Maia would react. They first capped her trach, but she took the cap off herself as the Drs all laughed! After the putting the cap back on the second time, she took it off again! So this time the Drs had the respiratory therapist remove the trach and cover the stoma (hole) with some gauze. Maia didn't like it at first and tried to pry the RT's fingers from her neck, but soon after she calmed down and relaxed. She looked good and her heart rate, respiratory rate and oxygen saturation remained normal... "her normal." We were all so happy to see her do so well without the trach. I think she did better than anyone expected.

Maia staring at the oxygen mask while breathing without her trach

The next day, they capped Maia's trach again and she did ok for about 30 mins. Then she started to get sweaty and pale, then her oxygen saturation started to drop... so I went ahead and took the cap off her trach and gave her some oxygen. After that, many of us, including some of her Drs. noticed Maia did much better when the entire trach was taken out and she was forced to breathe on her own... mainly because her airway was clear with no obstruction. But when capping her trach, it seems that the trach tube itself becomes an obstruction and she has a harder time breathing with the trach still in her airway. So this has now led to an ongoing discussion about whether or not to take her trach out (permanently). Dr. Cohen, Maia's heart surgeon believes Maia will do better if the trach is taken out, and she showed that she can breathe on her own through her nose and mouth. However, the Dr. Chan, the ENT (Ear Nose Throat) Dr. believes that Maia is not yet ready to have her trach taken out. In babies, trachs are normally taken out when they are one year old... Maia is 8-1/2 months, so he sees her as being too young right now. The normal way to wean off a trach is by increasing time on the Passy-Muir valve, which Maia has been doing, then to cap the trach and eventually increase the hours of the trach being capped until she can do it continuously, before considering decannulation. If they plan on being aggressive with her weaning, and are able to do so in the next 2-3 weeks, then we would rather have her weaned and decannulated before going home. Why go home sometime in the next few weeks, only to come back a week or so later to be decannulated? We've been at the hospital for this long that a few extra weeks doesn't really make a big difference to us! One thing the Drs were worried about is having Maia go home and something happening to her trach. Since Maia is a single ventricle baby, the amount of time before her oxygen gets too low is decreased considerably, compared to that of a baby with a normal heart. However, with Maia proving to everyone that she is ok and doesn't fall apart when her trach is taken out, some of the Drs are considering sending her home with a trach. 

Maia and her facial expressions

Many of the Drs have voiced their opinion about whether to have Maia decannulated now or later, and this discussion has been going on now for at least 3 days. If you ask us, we would very much prefer to have the trach taken out before Maia goes home. It's one less thing we would have to worry about. Plus, we believe that she will do better without the trach... we know she can breathe normally on her own. Either way, whatever they decide, we are prepared. We've been pretty much doing most of the trach care since January. 

For now we continue to enjoy spending time with Maia. Each day she is more interactive. We are also able to bottle feed her a few times a day. She is smiling more and laughing more and even likes to High-5! Since the Drs mentioned the words "coming home" just a few days ago, we're now somewhat scrambling to get the house ready! The furniture in our room will need to be rearranged to fit her crib (which is still in the box!) We also need to get our vents thoroughly cleaned along with the carpets... it's not a requirement, but the house certainly needs it. Plus, we can never be too careful when it comes to cleanliness! 

Feeding time with big brother Marcus

Feeding Maia her green milk

It's been such a joy to watch Maia recover from this last heart surgery. It seemed to happen so quickly and each day she looks more and more like a healthy baby. She is still delayed when it comes to some of her milestones, but that is expected, considering what she's been through... and she's been through a lot! A lot more than some of the adults I know! But we are ready for her to finally come home. Whether it happens with or without a trach, it looks like her homecoming will be happening sooner rather than later! We can't believe it's really happening... we are truly blessed!

1 comment:

  1. Thanks for keeping everyone in the loop about Maia. We pray for her all the time.


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