Rebecca Haskins – Page 4

First Expansion Coming Monday

Miriam’s first VEPTR expansion will be performed this Monday morning (June 24) by Dr. Williams. We apologize for neglecting to update the schedule here for those keeping her in your prayers (thank you!). The procedure was moved up because Miriam has been having some discomfort and irritation from one of her devices near the spot where her skin broke down in March. At implantation Dr. Williams intentionally left the VEPTR that anchors into her spine in her lower back longer than usual. (When she gets tall enough it will need to be exchanged for a larger size rod, but this extra length should help delay that larger surgery.) However, this left a tail end of the rod that protrudes noticeably under her skin. It has continued to irritate her from the inside, even after Dr. Shapiro shortened it in March. Over the last month it has developed a bursa – a fluid filled sac – and Dr. Williams decided to go ahead with her expansion to remove the irritation. He will move the extra length of rod up rather than lengthening the device, so the end should be flush with her spine and no longer protrude.

Dr. Nowlin is also scheduled to be there for the procedure, to scope Miriam’s throat and make sure there is no trace of the fibroma present. She has thankfully had no obvious symptoms, but we are glad he will be there to make sure her throat is healthy before they begin. He will also have a good baseline for comparison if (God forbid) the brief intubation required for this procedure causes anything to grow in her throat again.

Dr. Williams has told us that Miriam will likely go home Monday night, barring any unusual complications from the surgery. She should be back to herself in just a few days. Please pray for a straight-forward surgery, an easy recovery, and protection over her throat. Thank you for walking this road with us.

Throat Endoscopy #3 Results

Miriam’s ENT performed a third endoscopy on her throat early this morning, with mostly positive results. There was some growth on her throat in the same spot as he has previously removed fibromas twice before, but it was much smaller (even after seven weeks between excisions). It was clearly a lump running vertically along the wall of her throat, whereas before the masses were growing out into her throat and blocking her airway. Dr. Nowlin said this type of growth is much more typical of an “irritation fibroma,” caused by an over-reaction to a stress to the throat – in Miriam’s case, the breathing tube from her VEPTR implantation surgery. He is not ruling out the possibility of the mass growing back once again, but overall it sounds like this is much closer to the expected progression of similar cases and that is reassuring going forward.

Dr Nowlin does not anticipate needing to see us again before Miriam’s expansion surgery in August. He will be in attendance then so that he can scope her throat while she is already asleep for the expansion. If anything is present, he will be able to remove it at that time. It will also give us a good baseline for the health of her throat before it is subjected to another breathing tube. Thankfully, this surgery will only require a breathing tube for a couple of hours at most, rather than over two days like the implantation. Her risk for injury or irritation should hopefully be much lower this time around.

We are greatly relieved that the growth seems to be slowing, and hoping that it will heal itself completely this time. Thank you as always for your prayers.

Many Thanks and Another Prayer Request

We are grateful for many things. The greatest right now is how well Miriam is healing from her surgery. Since her skin breakdown was repaired she has been doing really well in her recovery. Her scars seem very solid and she has had hardly any pain. We visited Dr. Williams on Wednesday for a check-up and he was pleased with her progress. We will see him for a pre-op visit in July and then she will have her first expansion sometime in August. She has not grown much or gained much weight yet, but he is not concerned because 4-year-olds often experience a lull between growth spurts.

We are also grateful for the amazing generosity shown to us by many people, both friends and strangers. Several of you reading this contributed to our youcaring site to help with our expenses, and we wish to thank you from the bottom of our hearts for carrying us through the surgery without worry of immediate financial burden. And on top of that, we were extremely blessed by several members of the choir of Becky’s home parish of St. John the Evangelist in Davison, Michigan. They took it upon themselves to organize a Victorian Tea fundraiser for Miriam, and far exceeded even their own hopes for the event. Over 250 people attended and donated enough to cover the remainder of Miriam’s bills for this year and into the next. We can never thank all of these generous donors enough, especially those who worked to put together the event. Thank you, thank you, thank you!

We are asking for renewed prayer as we head into next week. Miriam is returning to the surgery center on Monday to have another endoscopy on her throat. Her voice is still making occasional strange sounds, and she is still making a few sighing noises in her sleep. Her symptoms are far less severe than before her two previous excisions. Her ENT will be checking once again to see if there is swelling or any kind of a growth in her larynx around her vocal cords. We are praying there is little to nothing there, because if something has grown back we will truly be in uncharted medical territory. Please pray for protection over her in surgery and for guidance and wisdom for her doctors. Thank you as always for your generosity in prayer. It is obvious in Miriam’s peace and joy despite all she has been through.

Repeat Endoscopy

I (Mom) called Miriam’s ENT office on Wednesday because we have already begun hearing her vocalizations return occasionally while she is sleeping, and she has been complaining of her throat itching. The nurse replied with a voice mail that she had scheduled Miriam for another endoscopy in the Surgery Center for Monday morning. After a frustrating 48 hours of not being able to reach anyone in the doctor’s office, we found that the doctor had already intended for her to have another full scope under anesthesia after four weeks to get see if her cyst is re-growing, rather than just a follow-up office visit as we thought. Due to her symptoms they are moving it up to only two weeks.

Here is what we know: the cyst was (is?) a benign fibroma, not caused by cancer or a virus but purely by irritation. However, it is extremely unusual for this kind of cyst to grow so quickly or so large. The cyst removed by the doctor was very close to completely closing her airway, and we are very grateful it was caught and treated in time. The doctor is anxious to see if anything has returned because we do not want it to get so dangerous this time.

We do not know if this was caused by the intubation required for her skin repair which came so close to the cyst removal last week, or if it would have happened anyway. We also do not know yet if this is going to be a risk every time she is intubated for a surgery. This is scary since we are committed to Miriam having a surgery every six months for the next 12 or 13 years. We are eager to ask the doctor his opinion, but I have a feeling he may not know either until we are farther down the road.

She will be having the endoscopy at 9:30 Monday morning. I believe that if they see any sign of the cyst they will go ahead and remove it at that time. If the cyst has returned I don’t know what the follow-up will be – perhaps another endoscopy a few weeks later.

Please join us in prayer for protection over Miriam and true, complete healing of her throat. You might wish to join us in this Novena to St. Blaise, who is the patron saint of throat afflictions after he saved a child from choking on a fish bone. Here is an appropriate excerpt of a prayer if you can’t say the whole thing:

St. BLAISE, gracious benefactor of mankind and faithful servant of God, who for the love of our Savior did suffer so many tortures with patience and resignation; I invoke thy powerful intercession. Preserve Miriam from all evils of soul and body. Because of thy great merits God endowed thee with the special grace to help those that suffer from ills of the throat; relieve and preserve Miriam from them, so that she may always be able to fulfill her duties, and with the aid of God’s grace perform good works.

Home again, home again

Miriam did really well through the night and woke cheerfully in the morning. All the cultures on her wound from yesterday came back negative so there is no sign of infection at this point. After some final checks the doctors released her and we headed home, but not without first rocking her dolls in the room’s rocking chair and visiting the playroom.

She spent the day happily playing and had a good appetite for all of her meals. She will be visiting Dr. Williams next Wednesday to check on the healing progress and have the staples removed. Please join us in praying it will be her last visit with them for a while!

Cyst removal surgery in the morning

Please say a prayer for Miriam tonight or early tomorrow morning. She is having the surgery to remove the cyst from her vocal cords at 9:15 am. We can’t wait to hear her sweet voice back to normal!

A Tangential Complication

About a week after Miriam’s VEPTR surgery, we began to hear a sighing sound from her room while she was sleeping. As the weeks have passed, that sound has become more prominent, and her voice has also gotten increasingly raspy during the day. We took her to an ENT today to have her vocal cords checked. She had to have a numbing spray and then a flexible scope inserted in her nose, which she did not enjoy. The doctor saw she has developed a cyst on one side of her vocal cords, probably due to the irritation caused by the respirator tube from the surgery.

This means Miriam is headed for a minor surgery on Monday, March 11, to remove the cyst. The procedure does require general anaesthesia, but should only last 20 – 30 minutes. She should go home the same day. The doctor told us he was surprised to see a cyst, but that it was much easier to treat than some of the other possible complications he was anticipating based on her symptoms. He also said there should be minimal pain after the surgery. Please join us in praying that this procedure is easy and smooth and does indeed heal her so we can hear her sweet voice back to normal again!

Miriam’s Recovery

Miriam is now three weeks post-surgery, and doing great. She still has scabs from the major incisions, but the new skin that is forming is pink and healthy. Her energy level is nearly back to where it was before surgery. She has made lots of trips out of the house, including even some very active visits to the playground! One of her favorite outings was to the Mardi Gras party hosted by Regina Mater, a Catholic home school cooperative very dear to the hearts of Miriam’s grandmother and Godmother (and a source of powerful prayers during her surgery!). We wanted to share a few photos from the party with you to show how well Miriam was feeling just two weeks after surgery.

She is getting stronger every day! Thank you for your continued prayers!

Check-up with Dr. Williams

Miriam went to visit Dr. Williams today to check on her recovery. They took another X-ray, which showed that all of the fluid that had collected in her chest cavity is gone. Dr. Williams also estimated that the angle in her back caused by her scoliosis has dropped from above 45 degrees pre-surgery to about 7 degrees now. All of her bandages are off, except for a small band-aid covering the scab left from her chest tube. She can resume taking showers and playing as much as she has the energy to do.

She has been weaning off pain medication, but still needs some here and there to cope with her soreness. She is still cautious about climbing in and out of chairs and bending down, but overall is moving much more freely than a week ago. Her devices make some visible lumps in her back, and there is one prominent lump on her front where the rib that moved the most in the adjustment has pushed forward. Dr. Williams is sure these cosmetic issues will diminish as her body grows. She is still tiny (only 36 inches)!

We will return for another follow-up in six weeks, and he anticipates her first expansion will take place in August. Overall he is very happy with the success of the surgery and with how well she has recovered. We are very grateful for these things, too!

Miriam continues to get cards and packages almost every day. Thank you so much to all of you who have sent her something! She and her sisters know they are loved by friends all over the country and the world (and so do we)!